Sometimes the grief caused by the losses from this disease overwhelms me. However, I have moments when I appreciate that I can still accomplish a lot while living with IPF. I have to take a different approach and make accommodations, but I can create and follow through with plans that are important to me. I resolve to remind myself of this during the emotional turmoil that’s inevitable while navigating life with a fatal lung disease.

I recognize how different my life is now compared with the years before my diagnosis. I’m aware of my physical and mental limitations. However, my friends sometimes need a gentle reminder. Unless I’m wearing supplemental oxygen, they can forget that I have a chronic illness and expect me to be able to do as much as I previously could. When they realize that I can’t keep up, they work hard to alter their plans around my needs and include me in social events. Unfortunately, the reality for me is that my health often dictates my plans.

This concept can be difficult for others to understand, especially those who don’t have a chronic illness. They might question how a disease can dictate social plans, especially on my “good days.” I’ve been thinking about how to explain this to my close friends.

Following are some recent examples of how IPF can dictate my social plans:

Reducing exposure to germs: Many patients living with IPF take immunosuppressant medications. One of these is CellCept (mycophenolate mofetil). Those who are post-transplant may be on tacrolimus as well as other immunosuppressants. Because IPF is a lung disease, I must avoid exposure to any respiratory illness. My friend is getting married in September, and I’m looking forward to her bachelorette party. I can participate in the daytime portion of the event, but the night component includes going to a club. Though this is a normal activity for young adults, I’ll have to skip this outing. My medical team would be furious if they knew that I had exposed myself to all the germs in a crowded public space.

Adjusting to heat and humidity: Dealing with extreme temperatures — whether it’s hot or cold weather conditions — is difficult for people with IPF. In the summer months, I love spending time at our lake house. This summer I’ve noticed that I am more severely affected by the heat than in previous years. I’ve made some adjustments, which include bringing supplemental oxygen with me and limiting my time at the beach when humidity is high. I recently wrote about the topic of overheating — a new symptom — on the Pulmonary Fibrosis News Forums.

Elevation and air quality: I struggle to breathe even in ideal conditions, so I need to modify my itinerary when traveling to areas with poor air quality or high elevation. One example is my upcoming trip to Hawaii. I’m disappointed that I won’t be able to visit some of the main attractions, including the Road to Hana on the island of Maui.

Fatigue: Those living with a chronic lung disease experience intense fatigue. It feels like my body is running a continuous marathon, and by the end of a workday, I am exhausted. I often miss out on after-work activities such as going out for dinner with my colleagues, which is part of our company’s wellness initiative.

How does your IPF/PF dictate your social or daily plans?

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

4 comments

Hi, does anyone else with PF struggle with wind, i myself find myself outside walking a little slowly but if a wind comes up it grinds me to a standstill , i just cannot get my breath…would a ventolin powder inhaler help any?
Thanks, Geoff

Thank you so much for reading my columns and getting in touch via the comments. Wind isn’t something that typically bothers me, although it might be for others. Are you part of our PF forums yet? You can sign up here: https://pulmonaryfibrosisnews.com/forums/ if interested, this would be a good topic to ask others about on the forums in hopes you could get some answers? A ventolin inhaler might be effective for you, I’d be curious to hear what others think. Thanks for writing.
Charlene.

Congratualtions on the upcoming conferral of a Masters Degree. I like your bio and your willingness to tell everyone about yourself.

We’re on the same journey; life challenges and changes us daily. I experience same issues with fatigue, heat, humidity [central air cond finally installed here-thankfully!], etc.

Have a wonderful trip, and yes, you must take “the GROUP” to Hawaii with you!!! I also make travel decisions that differ from what I would have done prior to my diagnosis and current 24/7 oxygen dependency. I understand your disappointment about not being able to see everything you want to. I’m confdent you’ll make “lemonade out of lemons.”

Thank you so much for all of your kind words – as always, it is wonderful to hear from you! I’m happy to report that my Master’s Degree went really well, and I am applying a lot of what I learnt in many different career roles at the moment. IPF is sometimes getting in the way of that, but trying to continue on with what I love.

I promise to think of a way to bring the group/my IPF community with me to Hawaii in just 28 days! While I had to make some accommodations, I am so thankful to be able to still go to Hawaii and am eager to see how my lungs react to the fresh, salt water air. Stay tuned, I hope to post pictures and a small update each day on where I am! 🙂

Thank you again for your kind words, wishing you nothing but the very best as well my friend.
Kind regards,
Charlene.

Disclaimer:

Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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